This week, another article presents an argument for why “there is no autism epidemic.” But this time, the claims behind the argument, and the evidence, are real and made to advance our understanding of autism, not (as is the case with Kirby’s article) as a rhetorical exercise.

What Autism Epidemic? is the title of an article by Claudia Wallis in the January 11th issue of Time magazine in which George Washington University anthropologist Roy Richard Grinker “persuasively argues” that there is no epidemic of autism: “In Unstrange Minds: Remapping the World of Autism, Grinker uses the lens of anthropology to show how shifting cultural conditions change the way medical scientists do their work and how we perceive mental health.”
Fives points are noted:

BROADER DEFINITIONS Grinker and others say 50% to 75% of the increase in diagnoses is coming in these milder categories [of PDD-NOS and Asperger's Syndrome].

SCHOOL POLICY U.S. schools are required to report data on kids who receive special-education services, but autism wasn’t added as a category until the 1991-92 school year. No wonder the numbers exploded–from 22,445 receiving services for autism in 1995 to 140,254 in 2004…………..

MORE HELP, LESS STIGMA As services have become more available for kids with autism, more parents are seeking a diagnosis they would have shunned 30 years ago, when psychiatrists still blamed autism on chilly “refrigerator” mothers.

FINANCIAL INCENTIVES In some states, parents of children with autism can apply for Medicaid even if they are not near the poverty line. A diagnosis of mental retardation doesn’t always offer this advantage.

RELABELING For all the reasons above, many kids previously given other diagnoses are now called autistic.

Wallis notes one argument that will likely be raised to challenge Grinker’s analysis: If there is no real increase in the incidence of autism, why is there such a “mysterious paucity of autistic adults”—–if 1 in 166 children are estimated to have autism, then there ought to be 1 in 166 autistic adults out there too. Dr. Robert Hendren, executive director of the M.I.N.D. Institute at the University of California, Davis, is quoted as saying that “‘”I think we would be recognizing them in institutions’”; Grinker’s response is that “autistic adults are out there but wearing other labels.”

The idea of an epidemic is “reassuring,” Grinker observes. Thinking that some “mysterious environmental trigger”—such as lead or mercury—-has caused a dramatic increase in the incidence of autism is simply “‘easier,’” he notes, and much more so than understanding how the increase has arisen from a complicated combination of “‘multiple causes, shifting definitions and a scientific reality we are only just beginning to understand.’”

In his forthcoming Unstrange Minds, Grinker indeed writes that “the prevalence of autism today is a virtue, maybe even a prize” (p. 171). We see so much autism because we know what autism is. And because we know so much about autism, many more educational and school programs and services that are geared to autistic children, and that work, have been developed that did not exist before: We don’t need an “autism epidemic” to explain why we need the best education and services for autistic children and adults; we need the best education and services for autistic children and adults because they need them, period. These programs and services need to continue to be supported as we continue to learn more about autism, about more ways to teach autistic children and support autistic adults; as we continue to seek effective and, as Grinker writes in Unstrange Minds, “real solutions”:

“I am not so sure why people are so resistant to the idea that true autism rates may have remained stable over the years, and that there is no real epidemic……If there is no real epidemic, we might just have to admit that no one is to blame. Their desire is understandable. But we cannot find real solutions if we’re basing our ideas on false premises and bad science.” (p. 171)

I think my son has been autistic from birth; his sensory issues and lack of self-regulation (he never fell asleep on his own; still wakes up at night to come to our bed at 3 years-old) I had attributed to clingyness; his hyperactivity and sudden jerky movements since he was a baby I attributed to a possible ADHD; he missed that milestone of pointing and saying “look” even before the MMR, and thimerosal had been removed from vaccines before he was born. He never regressed; the only red flag for us was that he was acquiring language very slowly and doing mostly echolalia.

I suspect one of my cousins is Asperger’s. My husband’s family has a major history of depression/anxiety/ADHD.

So the vaccine theory never really hit tome to me. I don’t think the possibility should be abandoned, though. It IS a complex disorder, possibly with multiple causes, and all plausible hypotheses should be investigated.

http://29marbles.blogspot.com Brett

I always find the question of “where are the autistic adults” very interesting, amusing, and depressing all at the same time. As an engineer working with some ‘old school’ engineers (pre-digital), I come across adults in middle-age and beyond (men and women) every day who, if they were to be put under the clinical microscope, would no doubt be given a diagnosis somewhere on the spectrum. But this in no way changes who they are or what they’ve achieved.

I think the people who ask this question let their preconceptions, or fears, of what autism is cloud their ability to see what is in the world around them. They believe that autistics can’t survive in the world on their own, so how can they accept that an autistic adult could possibly live a successful and fulfilling life with no one knowing about it? (Of course, many of the people who ask the question probably don’t routinely encounter these ‘adult-autistics,’ and when they do they simply dismiss them as ‘weird’, not autistic.)

It is these same fears that prevent many parents from letting their children find their own way to a successful adulthood, almost guaranteeing that they will ‘fail,’ or at the least be miserable in their success. (ABFH has written quite eloquently about this in her recent Freedom to Make Mistakes post.

As always Kristina, great post. I’m definitely going to pick up Unstrange Minds when it hits the shelves.

Someone

I think that the five points that they bring up are generally correct, especially the first one. I feel that we’ve over-broadened the definition of autism and as such we are including people that we shouldn’t be including.

http://partprocessing.blogspot.com/ zilari

Someone: What is the threat of including more people, if it helps them to understand themselves better and when necessary, receive needed educational help and support?

It could very well be that the main problem, though, is that the educational system (and perhaps life in modern society in general) is not accomodating enough of individual differences and learning styles. Maybe some of those people who are being diagnosed now when they wouldn’t have been prior to the revisions wouldn’t be if the range of needed skills and “accepted” kinds of demeanor were not so restrictive.

jez rourke

Well, as always I’m gonna have to disagree. Clearly there has been rise in the number of autistic children. To think otherwise is to ignore what is right in front of us. It’s denial of the worst kind, denial which affects the very children who need services the most which makes it very dangerous.

The proof that there has been a increase in the rate of autism is not in the number of diagnoses, rather it’s in the minds, the faces, the behavior of so many more children than ever before.

Let’s throw the diagnosis away, ok. There’s no diagnosis of autism. What remains to be true is that I personally know at least 50 autistic children. I don’t need someone to tell me they’re autistic. Their behaviors scream it to me. 10 years ago I knew one child who exhibited the behaviors we now know as autism. And most people reading this know the same exact thing.

There is most certainly an autism epidemic. Diagnosis or not. You can call a dog a cat but it’s still a dog. Call autism what you like and say it doesn’t exist but unfortunately, there are an unbelievable number of children suffering at varying degrees from symptoms and behaviors which sure sound like autism according to the DSM manual.

But again, call it what you like. It’s not like there were as many autistic children 10 years ago but they “passed” as typical children. The assertion is absurd. A child who bangs their head half the day does not slip through system and considered typical. A child who has no language does not slip through the system not today or 10 years ago. A child who is hyperlexic, gifted, reading at 3, but unable to carry on a conversation does not slip through the the system.

So, semantics being what it is and statistics being what they are, you need neither to prove that the incidence of autistm has risen to epidemic proportions. All you need are your eyes.

Remember, Claudia Wallis was the reporter who covered the story A Tale of Two Schools which was HEAVILY biased towards the concept of floortime and throwing a koosh to autistic children and squirting them with Silly String to engage them. This was in contrast to the proven ABA scientific method used at The Alpine Learning Group, which is arguably the best placement for an autistic child in the country. So, I can’t say I’m a fan of her “research.” I’ve squirted my daughter with Silly String. She’s still autistic.

She’s not autistic because she was diagnosed with autism. She’s autistic because her behavior, her personality, everything about her says she is autistic. Honestly at this point in time, it’s utterly ridiculous not to mention unproductive, to try to deny the fact that every time we take a step we trip over three autistic kids. And we don’t need to see note from their doctor to know that they’re autistic, nor from Time Magazine.

Actually, 10 years ago, 20 years ago, hyperlexic gifted cant carry a conversation kids DID slip through the system.

I WAS that child. Medical diagnosis that my mom hid away. Told the school nothing about it. And they all thought it was ‘part of being super smart’.

Nope. I’m autistic. I found the medical diagnosis. It’s been confirmed. I slipped through the cracks at 5 schools, 2 girl scout troups, and at least 6 private psychiatrists I was taken to for alternate opinions.

Not too long ago, if words were coming out of your mouth, you weren’t autistic. That changed. It’s a change for better accuracy.

Someone

Well of course it’s inaccurate to think that autistics can’t ever learn to talk, but it’s still critical for the autistic to have had considerable language deficits (i.e. delays) during their developing years. It’s just the way that it is meant to be.

I guess that I sort of slipped through the system, more or less. I didn’t speak a sentence until I was 4 1/2, but I was never put into special education or anything like that (although they may have tried, I don’t know). I was also hyperlexic, which could have helped me get into the mainstream classes. It’s certainly possible, my point being.

I don’t like how people often think that they can tell whether a person is “autistic” or not from his or her behavior alone. A lot of things besides autism can cause such behavior. Not only that, but there really isn’t such a thing as an “autistic personality”; the personalities of those in the autistic population are quite varied. I mean, sure, autistics do tend to have some type of personality rather than another, but that’s simply a generality rather than the rule. It’s probably likely that the tendency is more due to how the individuals were raised/what factors they had to deal with in life, rather than anything intrinsic (although it still could very well play a role).

I hope that I made sense.

http://partprocessing.blogspot.com/ zilari

Someone said: “it’s still critical for the autistic to have had considerable language deficits (i.e. delays) during their developing years. It’s just the way that it is meant to be.”

Why is it meant to be? I am genuinely curious. Is there some brain research showing that the brains of those with early speech delays are structurally different in particular, identifiable ways for those without early speech delays but who otherwise demonstrate the kinds of developmental differences commonly identified in autistic people (outside the speech variable)?

I didn’t have a delay in being able to say words, but I did have a severe delay in being able to communicate. I didn’t realize conversations were two-way affairs until sometime after the age of 10 or so, and most of the stuff I said as a youngster was very echolalic and scripty and memorized. I would pull together bits and pieces of things I’d heard in attempts to communicate, but I did not come up with spontaneous answers to questions. For instance, in kindergarten I was also hyperlexic and could recite books and nursery rhymes verbatim, but could not tell anyone what I’d done at school during the day. The words just weren’t there. So obviously I had communication delays, despite the ability of my mouth to form recognizable words.

Someone

Well that’s a good question, and it deserves a good answer. I’ll try to get around to explaining myself sooner or later.

http://www.autismvox.com Kristina Chew, PhD

In regard to what Jez wrote about “seeing more autism”:

If you came to my town, you might think there was an autism epidemic—-there are more than 60 children in the autism program, maybe more like 70, and this is a mid-sized suburban town, plus there are more students who get sent out of district. The district only developed the programa about 4-5 years ago and it has been very good and—as a result—families have been moving in. Hence, to the casual observed, it might seem that there’s a (quite sudden) upsurge in the autism population.

Conversely, in the town where we used to live, there is only a preschool program and anyone above that age who can’t be mainstreamed or sent to a special ed class is sent out of district. The older kids become “invisble”—-I’ve really no idea of how many kids were autistic in our old town, because they were not visible and we were not told where they went to school or even, indeed, if they existed; as a result there seemed to be an “explosion” in the numbers of younger children. And not everyone can move away to a town with a better program.

These observations are rambling a bit—I have more to respond (thanks to everyone, you’ve given me a lot to think over) but Charlie wants to go for a walk…….

Micki

What concerns me is not the validity of “1 in 166 children has autism” or whether the numbers are actually on the rise, but what is being done with this information. Research groups are getting a lot of their funding by creating this disease mentality about autism. As in, let’s cure this disease before even more kids are affected. So the donations for research keep pouring in. But in the meantime, how are we helping kids/adults who are already affected? There is a tremendous need for better school programs, affordable therapies, vocational training…why isn’t the money pouring in for all this?

jez rourke

Absolutely on target Micki. That is the biggest problem: getting a decent educational placement for child with autism. That’s the bottom line. And unfortunately, at the present time, there seems to be a real deficit in that.

Kristina, I live in Bergen County NJ and I do believe that people move here from all over the country in an attempt to get specialized education for austic children. I’m not sure how successful they are in that area though. So many people I know have kids who are just wasting away in special ed classrooms in public schools, which clearly is not an appropriate placement.

For Zilari and Kassiane: there’s a saying that goes if you want to know what it’s like to be autistc, ask an autistic person. So I ask you both and I will be most interested in your experiences of growing up with autism and I’ll assume living somewhere on the spectrum as an adult. Are you satisfied with the education you received? If you could custom design a program for autistic children, knowing your experience, what would be included in that program? Were you happy with the way you were treated by family members, loved ones, friends, etc.?

If you could give me one piece of advice, what is the best thing I can do for my daughter who is 4 years old. She’s clearly smarter than I am, hyperlexic, piano playinig, perfect pitch, reading since she was 3. In so many ways, brilliant and gifted, yet she has all the issues that go along with autism. I wouldn’t even call it problems with communication, it’s more like she has no desire to communicate past the point of hello, i love you. I want a chocolate chip cookie etc. Most of her communication centers around what she wants/needs.

I’d love your perspective given your tremendous insight on what you believe would have been helpful to you and would have made you more comfortable in the world. Thanks Jez

http://www.autismvox.com Kristina Chew, PhD

Thanks for writing again, Jez; the points you and Micki make are why I mentioned the need to keep emphasizing education for our kids. My husband grew up in Bergen County; we were living in the Midwest (for our jobs) when Charlie was born and gave those up to come back to New Jersey for the sake of his education. We have lived in a number of different places around NJ and had some interesting, and some very difficult, times. We had to take Charlie out of his previous public school placement because things got very bad and homeschool him for a while. Like who knows how many families, we did everything we could think of to try to get Charlie into Alpine, PCDI, and all the rest. I also thought that Wallis’ portrayal of Alpine in her previous Time article did not give an accurate picture (and one of Charlie’s former teachers from a private ABA school is now a teacher there—-how we miss her).

Our kids need the best and the most appropriate education because they need it and, as you write, we do know that there are methodologies like ABA (the best method for teaching my son) that can be effective (if done correctly—–I have to say this, after seeing my son receive “ABA” that really wasn’t and then seeing him flounder, and I’ve seen plenty of kids “wasting away” in public placements, and in some private ones, too). I know that, epidemic or not, I’m never going to stop demanding the right kind of education for Charlie from the school district, because he more than deserves it, he needs it.

Charlie has the same issues with his communication—most of what he says are requests or mands. We try to work on short conversations that are more about describing and commenting; slow going, but we’ll keep at it.

I look forward to Kassiane’s and Zilari’s responses on this, too, and very much.

The term “epidemic” does not only mean widespread or everywhere around us, although it can be used that way. When professionals use “epidemic” they mean a rapid increase in the number of affected individuals, not a relabelling or better case identification. Whatever is said, I am not seeing a dispute that 1:166 children have characteristics which are now identified as ASD, and that these children and adults have needs which should be addressed.

I believe that the number of children who are profoundly disabled, moderately affected, and just atypical in ways we now call the autistic spectrum may not be significantly different than in the past. Maybe more children are affected; the old database isn’t as reliable as recent data. However, it is not an epidemic like an infection outbreak, affecting children who would otherwise be unaffected in a dramatic upsurge of new cases.

Environmental factors probably do play a role in affecting some individuals, so disputing the term “epidemic” should not hinder research into the causes, treatment and prevention of ASD.
However, research dollars may be better directed if we don’t think of autism as an “epidemic”, and we look at environmental factors in the broadest sense, rather than abrupt changes in something specific.

Jez Rourke

thanks for the thoughtful response stephen. and I do agree with your point. very often we, as a culture, redefine certain words and language and metaphors and they become accepted usage in the english language.

in the end though, isn’t it just semantics? let’s look at it this way. let’s eliminate “autism” in it’s most strict definition completely. 10 years ago, what was the incidence of children in this country who required special ed classes? I can tell you that 20 years ago when I was in school there was one school in my district for children with special needs and these were primarily down’s syndrome. in my high school there were perhaps five students in special ed classes and if i had to guess i’d say that they were ADD kids who essentially got pushed through school and had difficulty reading and could not be in a typical classroom.

so given that, today in this same school system there are two schools devoted to children with special needs, many many more are sent out of the school district, and i personally know 50 kids with special needs.

so clearly there has been a rise in the number of children with special needs. specifically, these children for the most part have been diagnosed with autism.

i conclude and i am open to all opinions and suggestions, my thinking tells me there’s a skyrocketing thing happening. perhaps epidemic is not an accurate word (i think i do agree with you on that). but maybe as a metaphor it’s accurate and maybe for lack of a better word the definition of the word “epidemic” will change.

I don’t know. Just a thought y’know. I mean worse things have happened to the english language, right? It seems that “orientated” is acutally acceptable word now. A word that made me laugh every time I heard it spoken is a real word now. But…..it still makes me laugh.

Your point is well taken.

Jez

http://autismnaturalvariation.blogspot.com Joseph

“Let’s throw the diagnosis away, ok. There’s no diagnosis of autism. What remains to be true is that I personally know at least 50 autistic children. I don’t need someone to tell me they’re autistic. Their behaviors scream it to me. 10 years ago I knew one child who exhibited the behaviors we now know as autism. And most people reading this know the same exact thing.”

The question of whether there’s an epidemic is a scientific one. It’s not something whose existence you can assert on the basis that it seems real enough to you. Or with anecdotal accounts.

I know many more autistic kids today than I did 10 years ago. Of course. They are the kids of the parents who we meet in speech therapy and other such things. That I didn’t see such kids 10 years ago means what? Also, it would be difficult to meet autistic kids when few are diagnosed, except maybe in retrospect.

Cognitive disability is not new. Hysteria about cognitive disability is not new either. It just went by other names in the past. Such discourse can be found online dating back to at least the 20s. Dr. Landon Down’s account of what were clearly autistic children in the late 1800s is an eye opener.

Stephen

Jez,

This is a pleasant exchange, and I am glad to continue with a response.

Where were the significant numbers of special needs (autistic or otherwise) children in years past? I went to public schools in the 1960′s and saw the same thing as you did. There were two small classrooms of special ed students in my elementary school (at the “T” end of the endlessly long hallway). There was one resource teacher (Miss Hamilton) for the entire school to provide assistance for students with learning disabilities. As for the more seriously impaired children, in the 70′s I had the occasion to visit a couple private facilities for special needs children. I am certain that many of the children served in such facilities are now in the community. By the way, I don’t remember any children with asthma or diabetes throughout my school years.

What appears to be intuitively obvious can be misleading. I don’t think useful statistics on this sort of thing were kept prior to the 1970′s, when medical and educational coding systems became standardized and more widespread. Determining if there has been an actual increase in affected children (instead of better, broader and more organized identification of children) is a hot topic of research with varying results. One example of how to get a handle on this was published in Arch Pediatr Adolesc Med. July 2003: Analysis of prevalence trends of autism spectrum disorder in Minnesota.

This is not to state there isn’t an increase, just to point out that it isn’t a “slam dunk” no-brainer. Nor does this minimize the need to address and research the causes of what is clearly a widespread and serious problem.

Consider this reasonable successful person. The man is a middle-aged mechanical engineer who plays 3 musical instruments to a professional standard and 2 others to a moderate level. He has written english for a living. He has had no training in writing, and has only had 2 years instruction in one of the musical instruments. He designs things for fun as well as a living. He reads history for fun. He collects machinery which he doesn’t have time to restore. He can do various other things unusually well. He is a perfectionist and is efficient. He is married with children.

Consider this quite disabled person. He is an autistic, and also appears to have ADD, bipolar disorder and post-traumatic stress disorder. He doesn’t have or want an official diagnosis. He can’t maintain eye contact for longer than 2 seconds with his wife or kids because it is physically painful. He can’t maintain eye contact with friends or relatives, nor can he touch them.
He can’t eat a lot of foods because they make him sick or make him feel crazy. He twitches and sometimes dribbles. He is large and perpetually shabby and unkempt. He suspects that his strange expressions cause people not to trust him. Often his skin tingles intensely for hours at a time. His legs twitch uncontrollably. He has offended the wives of many of his friends. He smokes cigarettes and marihuana to settle him, and help him both concentrate and sleep. If he ever has to stop smoking marihuana he will probably be unable to function as a normal person. The nightmares and the lies and the stupidity of the average human will overwhelm him.

He doesn’t understand a lot of human interaction, but he has learnt – through much pain – not to care.
He can’t compromise. He can’t do a second-rate job. He can’t drive slowly. He can’t watch TV without eventually becoming enraged. He can’t tolerate mediocrity or conformity or any form of unthinking behaviour. Fashion excites his withering contempt, as do so many other stupidities.

For those few who haven’t guessed, it is the same person. And the person exists beyond any doubt, living in a messy house full of books on the side of a hill in suburbia.

His take on autism is that any autism epidemic is a good thing. Autistics are the cure for the two great human crises looming – environmental stupidity leading to self-destruction and the devestating ability of normal human beings to believe the most outrageous lies. Often he feels ashamed to be human, but now, diagnosed informally as the result of a few tests on the internet, he can take refuge in the fact that he is not human at all, but an autistic.

I find Wallis’ statement that some will question the “paucity of autism” among adults and Hendren’s assumption that we’d see them in institutions ridiculous.

It is well known that many adults with Asperger’s were diagnosed with ADHD prior to 1994 because the DSM did not recognize Asperger’s and other milder variants of autism.

The fact that so many new diagnoses are these milder variants counters Hendren’s absurd contention. It is unlikely that you would see many adults with Asperger’s or PDDNOS in an institution.

Two of my children have been diagnosed with Asperger’s, which my ex-husband also clearly has, yet he is an MIT graduate and a well-respected IT professional in the financial industry. He was never diagnosed despite several classic indications.

A Mt. Sinai research study (conducted by students) using the Gilliam rating scale, designed for individuals ages 3 to 22, failed to identify Asperger’s in this 44-year-old man, despite the fact that the researcher noted he demonstrated several autistic phenotypes. He also scored 32 on the AQ test and describes several behaviors from childhood and exhibits several now that scream Asperger’s.

We are not seeing more adults diagnosed because (1) many of them don’t want to be; (2) many of them are not even familiar with Asperger’s if they have no children diagnosed with it; (3) many have accepted a previous diagnosis as explanation for their behaviors; (4) the costs of obtaining a diagnosis may be prohibitive and seem to offer little benefit; (5) most tests are not designed for older adults and may fail to pick up a diagnosis; and (6) as Tony Atwood writes, many adults with Aspergers acquire a certain level of social competence by their 40s that may make Asperger’s appear so mild as to be undetectable.

I do not believe there is an autism epidemic, but I think the author made some pretty silly statements in the attempt to offer up a counterargument and give the article the appearance of some sort of controversy.

http://crimsonthoughts.spaces.live.com/ Cliff

I probably would have passed off as mentally retarded, leaving out an autism diagnosis, and as such probably institutionalized.
I also think that, if you were to specifically identify some traits of person, that you would likely have a sudden increase number of those people as the distinction was recognized, and if there was an aspect of that condition that was negative, it would be segregated as a disease. Not only that, people would think there were more of these people because they saw more of these people, but generally because they recognized it in the distinction. I would even go far enough that any condition might be recognized as a distinction. A lower key example might be addiction, where the tendency is different and sometimes extremely dangerous, though because of the similarities in sociality and other things it might more easily fly under the radar. In fact, autism might be considered ideal to be recognized because the sociality aspect is so distinct to people as disconcerting, though even then in lower degrees it would fly under the radar in general until a more complete investigation was going through, where the aspect was more widely recognized.
Further, I think many individuals who were in any way excessively disabled (in an extremely broad usage on purpose) were generally pushed out and away from the visage of society. People were abandoned, figuratively and literally, for the challenges as individuals they possessed, were considered innate problems or given some other distinction (possessed soulless mass was the term Martin Luther gave to a child who was probably severely autistic-before strangling him), or perhaps an inaccurate distinction like ADHD. When the medical context came into being, they were brought in as victims, and recognized as autistic rather than something else.
Now, I am not making the claim that autism isn’t increasing. In fact, I’d assert that in selecting for intelligence to some degree we may have been selecting autism accidentally, as the two coincide. But I do think that an application of the term epidemic is misleading.
If I may, Jez, I could give a suggestion (though I’m under qualified, never having lived as as an autistic adult; I’m seventeen). In a single note, I’d say that it’s extremely important to play to your child’s strengths. It gives the individual a feeling of self-worth and inclusion using that strength. Emphasizing that over the negatives, which is bound to isolate, is something really important, something I only got later in life and something which really changed my life for the better (in fact, I had developed clinical depression largely coming out of rejection based on my weaknesses). Educationally, I’d note the same thing.